One-Liner Wednesday: pain

If we do not transform our pain, we will most assuredly transmit it.
~~~ Richard Rohr

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Valentine’s Day

The usual greeting for today would be “Happy Valentine’s Day!”

Not this year.

I’m having a difficult time using “happy” as an adjective after the last week.

My family has been struggling with caretaking issues for Paco, complicated by the pandemic. I’ve spent this weekend feeling as though I want to cry, but not quite being able to let myself do it.

It’s the opposite of “happy.”

The United States is also dealing with the first day after the second impeachment trial of our former president. The trial was sobering, as it drove home the extent of death, injury, and damage done during the insurrection and how very close the vice president and members of Congress came to being injured or killed. Somehow, even though more than 67 senators said that DT was responsible for inciting insurrection, only 57 voted to convict falling short of the two-thirds majority needed for conviction. There are likely to be legal repercussions for the former president coming through the judicial system, possibly both federal and state. Meanwhile, he is likely to seek revenge against those Republican members of Congress who voted for impeachment or conviction by advocating that their state parties censure them, by advertising against them, and by funding primary opponents.

Let me be clear that even if DT had been found guilty in the Senate trial, it would not have been an occasion of happiness. It is impossible to feel happy in the face of so much suffering, pain, and fear.

I am trying to find comfort in the message of Valentine’s Day that love is strong, enduring, and the most important aspect of our lives.

May it be so.

May it overcome our present situation.

JC’s Confessions #11

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, now a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.
~ JC

I find it easier to deal with suffering that isn’t right in front of me.

There is still concern and worry, but it is much less likely to reach a paralyzing level.

With the pandemic, I know there are many people suffering in many places around the world. There is a certain level of continuing worry and heartache.

Still, it is not as painful for me as being with someone who is suffering.

Some of the most difficult things I have had to deal with in my adult life have been medical issues with my family. Some of these have been difficult to diagnosis conditions with my children which have resulted in being home with them continually and not having effective treatment available. It was so stressful to see someone need to hold onto things to be able to navigate, to know that there was only enough strength to make one trip a day up and down the stairs to the bedroom, to not be able to relieve constant pain.

And it is always there in front of you and, despite different doctors and their opinions and hours on the phone with the insurance company and trying everything the doctors recommend, you are helpless.

Somehow, though, when suffering is at a distance, I can imagine that, perhaps, things are not as dire, that things are bearable or treatable or maybe even okay. Sometimes, I can even banish worry for a little while.

I don’t know if other people find it more painful to witness suffering of a loved one firsthand or to be seperated from them. It’s not something that people tend to discuss.

I only know that it is much more painful for me to watch a loved one suffer, especially when everything I can do seems so small in the face of the problem.

Hospice month

November is National Hospice and Palliative Care Month in the United States. Some people don’t realize that palliative care exists outside of the context of hospice. Palliative care addresses pain that affects someone from any cause. People who are dealing with chronic or severe pain can consult with a palliative care specialist, who will put together a pain management plan for them. Hospice care involves palliative care for those in their final weeks/months of life.

While the alleviation of pain is an important part of hospice care, hospice is meant to serve other needs for the person who is dying and their loved ones. There are social workers and chaplains for help with personal, social, and spiritual needs. Aides help with physical care and companionship. Volunteers come to keep the patient company or offer special skills, such as massage, to relieve pain and stress. Nurses are the driving force that coordinates care. They visit as often as needed as circumstances change.

Hospice as a philosophy is meant to unfold over the final weeks and months, but sometimes is only called in for the very last days. For decades, hospice care providers have been advocating for referrals to be made enough in advance that there is time to develop a relationship with the patient and their loved ones, so that they can provide services while the patient is still able to interact. There are, of course, instances in which that is not possible, when an accident or final illness occurs without notice, but it is still unfortunately common for primary care physicians and specialists to delay hospice referrals.

We experienced such a delay with a family member, so that hospice was only called in for the final day. Even though time was brief, the experienced nurses were able to give us the tools we needed to relieve pain and recognize the progression of symptoms when our loved one was near death.

Our experience with Nana was on the other end of the spectrum. She was under hospice care for fifteen months, was decertified and off hospice for four and a half months, and back on for her final ten weeks. Some people commented to us that we had called hospice in too early, but that wasn’t really the case. Without hospice care, Nana would have died much sooner. At least twice, they were able to treat symptoms that would have caused fatal repercussions, had the hospice nurses not been able to get them under control.

It is true, however, that there are a lot of rules, especially with insurance, about hospice care. Those rules are set up for people who have a fairly accurate life expectancy estimate, such as someone with late stage cancer or kidney failure. With something more unpredictable, like certain types of congestive heart failure or pulmonary disorder, the hospice rules requiring a certain amount of decline over a given time don’t fit very well. I hope that, over time, the rules will be changed to make hospice care more accessible.

As National Hospice and Palliative Care month comes to a close, I salute all the compassionate nurses, aides, volunteers, social workers, chaplains, and administrators of hospice. You help people at one of their most vulnerable times. I wish you the strength and peace needed to continue in such important work.

IC Awareness Month

September is IC Awareness Month, so, as someone living with IC, I am doing my part to spread awareness.

IC stands for interstitial cystitis, which is also known as bladder pain syndrome or hypersensitive bladder syndrome. Symptoms, for most, include pelvic pain or pressure and increased urinary frequency/urgency. It affects millions of people in the US and millions more around the world, although estimates of prevalence differ. Part of the reason that statistics are hard to come by is that many people see multiple doctors for years before they are correctly diagnosed. This delay is further exacerbated by the fact that IC is more common among women. As with other ailments among women, some patients have been told their symptoms are “all in the their heads.”  Others have been misdiagnosed with reproductive system problems. Among men with IC, the misdiagnosis is usually chronic prostatitis.

Another problem with getting a correct diagnosis is that there is no definitive test for IC. One subtype of IC, accounting for about 10% of cases, causes lesions in the bladder, which can be seen during cystoscopy, but the other types do not have that straightforward a presentation. Diagnosis is also complicated by the fact that no one knows what causes IC. It behaves somewhat like an autoimmune disorder and also seems to be related to the nervous system. Research is ongoing. Many patients with IC also have periods where the symptoms flare up and other times when they are lessened or absent. This can also be a factor if you have a long wait to see a specialist; your symptoms may have disappeared by the time of your appointment.

I have one of the subtypes of IC in which its symptoms occur in conjunction with other pain syndromes, such as irritable bowel syndrome, endometriosis, and vulvodynia. This can complicate treatment because there are so many different factors involved. Some people with IC, like me, have success with medications. Once symptoms have calmed down, the medication regimen may be ended and other methods, such as dietary changes and stress reduction, may be able to avert flares or, at least, keep them manageable.

One of the things that I need to avoid is acidic foods. I do have a dietary supplement that helps with eating acidic foods, including fruits, although I still avoid citrus. When I make tomato sauce, I put in a bit of baking soda to counteract the acidity. Bonus: it’s fun to watch the sauce foam and bubble! It can be difficult to find things to drink beyond water and milk. I never was a coffee and tea drinker, so I didn’t have to worry about giving those up. I can’t have anything carbonated, so no sodas or sparkling water. (Some people with IC can drink certain varieties of coffee, tea, and soda; sometimes, trial and error is needed to figure out what works for an individual.) My new splurge drink is Hint, fruit-flavored water without added sweeteners or calories. It’s fun to have another option.

The most difficult thing for me to avoid is chocolate. I can have white chocolate, although I need to shop carefully as some of it is just bad. It is the cocoa component that is the culprit with IC, causing a histamine reaction in the bladder. I admit that I miss milk and dark chocolate, and, especially, hot cocoa, which I used to make with cinnamon and ginger. Every once in a while, I will eat a bit of chocolate. I’ve found if I eat just a little, I can manage the flare that will follow, but usually I am good and avoid it completely.

If you think you may have IC, bring it up with your doctor. My doctor recommended that I see a urogynecologist, who was able to diagnose and treat me properly. There are treatment options out there, which differ depending on the subtype of IC you have. Some types are able to be cured with the right therapy, while most others can learn to treat and manage their symptoms.

Don’t let anyone tell you that your symptoms are all in your head! Don’t try to self-treat because of embarrassment or other factors. You can find more info about IC from the Interstitial Cystitis Network, which is one of the sponsors of IC Awareness Month, or from reputable medical websites.  The stress of feeling alone with your illness can make it even worse, so reach out.

One final thought:  Please keep in mind that IC and many other illnesses are invisible. This does not mean that they aren’t causing pain or other symptoms. Just because someone “looks fine,” doesn’t mean they are fine. If someone you know has or may have an invisible illness, treat them with kindness and understanding. Help them find the medical help they need. Support them as they deal with their illness. It will make a difference in their lives.

 

SoCS: organ

While I have been delinquent/busy/overwhelmed and a few other adjectives lately, I have mostly been skipping out on Stream of Consciousness Saturday, which I once did diligently, but when I saw that this week’s prompt was “organ,” I knew I had to write.

In my younger years, I played the organ. After several years of childhood piano lessons, the priest in our tiny Catholic church asked me if I would learn to play the organ so that I could take over when our current high-school-aged organist went away to college in three years.

So, I learned.

I was lucky that my first organ teacher was very good, so I developed good technique. It was also good that he played in a larger church in North Adams which had a pipe organ, so I got to learn on a decent instrument, even though I was practicing on a not-great electronic at my own church.

I played at my church, first substituting and then becoming our organist my sophomore year in high school. I earned $5 for playing two masses every weekend and $3 when I played for weeknight masses a couple of times a week. I played a few weddings and funerals, too. I admit that playing funerals as a teen was really hard.

My original organ teacher had moved away and I was back to studying piano as I was looking for a college to attend, but my teacher used her connections to get a list of nearby colleges that had good organ/music programs. Smith was on the list and I fell in love with it on a campus visit, applied early decision, and was accepted. I wound up being the only organist in my year and played often at Catholic mass and played preludes and postludes for ecumenical services and at some college events. I used to joke that I had the biggest practice rooms on campus, as I played the three-manual Aeolian-Skinner organ at the chapel and the four-manual Austin in the 2,000-seat John M. Greene Hall.

After college, I spent a couple of years in an assistantship at an Episcopal church and after my daughters were old enough, I went back to playing, mostly on a volunteer basis.

Unfortunately, there was a problem. Even as a teen, I had pain in my right arm. It would come and go, but I sometimes had longer bouts of pain, especially if I played the piano a lot. (I will spare you the discussion of how piano and organ technique differ.) As time went on, I had more and more problems which led to doctor visits, physical therapy, various diagnoses including what is usually called “golfer’s elbow” and eventual surgery. We had hoped that would finally solve the problem, but I developed calcifications which have made the problems permanent.

I have shifted some things that I would ordinarily do right-handed to my left hand to help protect my right hand from over-use and pain. Obviously, this strategy does not work with playing the organ which takes both hand and both feet. If I had been one of those people who was a fantastic sight-reader and improviser, I might have been able to continue playing because I wouldn’t need very much practice time; alas, I am someone who needs lots of practice to play well.

For a few years, I was able to continue some accompanying with the youth choirs at our church, swapping over to conducting as needed to protect my arm. When that parish fractured and we had to leave, I no longer had a reason to continue playing or access to an organ and I stopped playing totally.

Sometimes, it’s still hard. Sometimes, it seems like another lifetime. Most times, I don’t think about it – and then, something happens to remind me, like hearing organ played on public radio or getting ready for Christmas or a prompt from Linda, and I miss it…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “organ.” Join us! Find out how here:  https://lindaghill.com/2018/07/20/the-friday-reminder-and-prompt-for-socs-july-21-18/

 

 

One-Liner Wednesday: Hate/grief

“Hate is just a bodyguard for grief. When people lose the hate, they are forced to deal with the pain beneath.”
~ ~ ~ Sarah Fields

Join us for Linda’s One-Liner Wednesdays! Find out how here:  https://lindaghill.com/2016/12/28/one-liner-wednesday-one-of-those-days/ .

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waking up to more violence

The level of violence in the United States and in the world was already much too high.

And then, there was this week.

It’s too much to bear.

Yet, we must go on.

But not with violence.

Not with vengeance.

We need to stop to reflect, to examine our problems as a society, to consider how to act with greater justice, mercy, peace, and love, to put the best solutions into practice, to uphold the dignity of each person and protect their safety.

We are all wounded, which makes us vulnerable.

Many want to repay violence with violence, but that is what has gotten us into our current untenable position.

The way of non-violence is not easy, but what has the way of violence gotten us?

I wish there was a way to magically draw us into harmonious communities, but there isn’t.

All I can do is look to my own thoughts and heart and keep them focused on positive change, not violence and vengeance.

And I can beg you to do the same.

Wounded

Sharing this thought-provoking, heart-breaking post from Nancy of Marginalia.

It is hard not to lead with our wounds. We all have them. Some are personal. Some are from childhood. Many are cultural. Every day we step out into the world

Source: Wounded

April 8

I am going to preface this post with the statement that Nana is doing well, so as not to cause anyone undue stress.

On Friday, April 8th, my plan was to do a couple of things at Grandma’s cottage, which we were working on cleaning out, have lunch with a friend, and then head to Syracuse to bring daughter T home for the weekend, which would be her first time home since Grandma died on March 22nd.

A few minutes after I arrived at the senior community, my cell phone rang. It was my mom (Nana) calling from the emergency room. She had collapsed in the waiting room of a medical building across the street from the hospital. The rapid response team had done a couple of rounds of CPR on her and she was in the emergency room for monitoring and tests.

I used the speakerphone to tell B what was happening. He made arrangements to go to Syracuse to get T. I left messages for my friend not to expect me for lunch. Meanwhile, I drove to the hospital.

I was lucky to find a parking space in the visitors’ lot and rushed up the hill toward the emergency entrance, a cold wind blowing directly into my face, making it difficult to catch my breath. After an unusually mild winter, we had a couple of cold snowy weeks once spring had officially arrived.

Once I was able to get through the line and behind the locked doors of the ER, the wait was on. An EKG was done. The heart monitor was tracing green lines across a screen above Nana’s head. Blood was drawn for tests. They took Nana down for a chest X-ray. There was a line started in her arm, although she wasn’t hooked up to any intravenous fluids. She wasn’t allowed to eat or drink. We were talking to pass the time. The ER became increasingly busy and noisy.

Nana was having some pain in her back and chest. The nurse told us it was from the CPR. A small price to pay from having been brought back from death…

Several hours later, the physician assigned to her case came in. Nana was not dehydrated. Her electrolytes were fine. She hadn’t had a heart attack.

In fact, her heart had not stopped at all.

She had fainted, mostly likely from a combination of cold, wind, walking too quickly uphill in the morning when her medications tend to drop her blood pressure.

We were grateful that she was okay, although I admit that I have been struggling with the fact that a highly trained medical team missed her pulse and performed CPR when they should have been reaching for the smelling salts.

This was especially difficult as she has had to deal with a bruised chest and ribs over these following weeks. It was all unnecessary.

For me, it was also an extra measure of fear that pushed me within a hair’s breadth of melting down. I have been working hard at keeping myself functional during this stressful time. For a few hours, I felt as though I might not be able to cope with an added crisis.

Thank God that Nana and the rest of the family were spared what could have been so much worse.